Unchecked: The architecture of disinformation

Episode 3: Disinformation and vaccines with Dr. Adam Ratner

• Curious Squid • Season 1 • Episode 3

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SYNOPSIS
Rachel and Dan talk to Dr. Adam Ratner, author of the new book Booster Shots, about the misinformation he encounters as a pediatric infectious disease specialist. We discuss the distinctions between vaccine hesitancy and being anti-vax, and how misinformation has an impact beyond individual healthcare. Dan uses the discussion to highlight a new “lens” called double-tagging, and Rachel is inspired to establish the lens “frenzy.”

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STORIES OF DISINFORMATION

The Fifth Column

Rachel describes how the US used the fictional threat of a “fifth column” to bolster their argument for Japanese internment camps.

Reciprocal Tariffs

Dan highlights some of the more subtle and insidious misinformation about Trump’s tariffs.

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INTERVIEW WITH DR ADAM RATNER

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LENSES

Double-tagging

Seemingly innocuous labels can be turned into misinformation by applying them in a way that is technically accurate, but twists the meaning of the label. Tagging anti-vax information with the label “vaccines” is misleading, and undermines the integrity of the system.

  • How might tags and classification schemes be co-opted to threaten the system’s integrity?
  • How does the system’s classification scheme adapt to deal with neutral terms that have become loaded?

Frenzy

Information systems have a responsibility to help users understand what’s truly important and/or urgent. Systems must avoid contributing to the frenzy of information.

  • How does the system help participants prioritize without causing a frenzy of information? 

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Personnel

  • Dan Brown, Host
  • Rachel Price, Host
  • Emily Duncan, Editor

Music

  • Turtle Up Fool, by Elliot

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Unchecked is a production of Curious Squid

Curious Squid is a digital design consulting firm specializing in information architecture, user experience, and product design

SPEAKER_01

It is so much easier to scare people than to unscare them.

SPEAKER_00

You're listening to Unchecked, the podcast about the architecture of disinformation with Dan Brown and Rachel Price.

Dan

Hi, this is Dan Brown, and I'm here with my good friend Rachel.

Rachel

Price. I do have a last name. It's Price.

Dan

I am fascinated by people like you and me who have normal words for last names.

Rachel

I love it. Do you know how much easier my life is when I call the insurance company?

Dan

Really?

Rachel

I will not say my husband's full name on the air because he deserves his privacy, but it is Dutch. And there are a lot of letters that make no sense being next to each other. And thus I did not take it when we got married for that and many other reasons. But having a last name that's just a noun, great.

Dan

Do you have a like a go-to phrase that you say? Like I always say like Dan Brown, like the color.

Rachel

Rachel Price, like, is right.

Dan

I hope that's true.

Rachel

It is true.

Dan

Anyway, you've joined us for another episode of Unchecked, where we uh talk about the architecture of disinformation. We talked to Dr. Adam Ratner later. Dr. Ratner is a pediatric infectious disease specialist. He's got a new book out called Booster Shots. So he's doing real media, but he also agreed to chat with us about the use of disinformation and misinformation in his space. But before that, Rach, we're going to tell some stories.

Rachel

Yes. Dan, what do you know about the fifth column?

Dan

Virtually nothing.

Rachel

So lots of bad, stupid decisions were made that led to uh the internment of Japanese people in the United States during World War II. And this story really focuses on one aspect of that, which is the myth of Japanese people in the United States being a quote fifth column. A fifth column is a group of people who undermine a larger group or nation from within, usually in favor of an enemy group or another nation. That's from Wikipedia. But the point is, anti-Asian prejudice was already really strong in the US before World War II. And after Pearl Harbor was attacked, it basically became socially acceptable to actually legislate anti-Asian sentiment and point to this fifth column idea, which fueled the misinformation that somehow the Japanese population in the US played some role in supporting Japan's efforts during World War II. The takeaway here is that officials never had any hard evidence indicating there was fifth column activity going on. But they used that argument anyway as justification to legislate anti-Asian sentiment that had already been building. This might remind you a little bit of how the Alien Enemies Act is currently being used by the current administration to target Venezuelan immigrants. So this is not new behavior, unfortunately. If you Google the myth of the fifth column, you will quickly see that the threat of a fifth column is a pervasive one. It's basically the justification for racial prejudice during wartime. If you can point to a group of people and accuse them of being a fifth column, you can pass legislation to treat them like bad actors. So misinformation doesn't have to be like a single little lie, a single mistruth, a single bad fact. It's often a years-long framing or a way of setting context in a particular light. So it's kind of a way to move the Overton window and to change what is socially and politically acceptable to consider and then to legislate. So this is the kind of misinformation that I think is a lot harder to see when it's happening, which I think makes it much more insidious and dangerous. And that's why I brought it here today.

Dan

I appreciate you bringing that up. One of the things that strikes me when you're telling that story is how much that disinformation campaign relied on existing prejudice.

Rachel

Yeah. And I think frankly, when we start to notice it is when the targeted population of that prejudice is not one with zero power and zero voice. Right. When it's a population that is already marginalized, we don't tend to see that as misinformation right away. And now, you know, when you see a broader population of liberal vaccinated people being put in this overton window of things that can be now re-legislated, now there's more of an outcry and there's more noticing that this misinformation is happening. So this story is one example of a thing I've been sitting with that I think we'll continue talking about, which is like looking at like misinformation doesn't need to be a lie. It can, it's actually context setting, and it often relies on who is in power and who is marginalized and like what voices kind of rise to the surface as being able to point out when something is incorrect. So, Dan, what did you bring us today?

Dan

I live with two economists. I don't know if you knew that about me. I didn't know that. My lovely wife, her original profession was she was a developmental economist, and my mother-in-law, who lives with us, is a international trade economist. So you might imagine there are many conversations happening in our house around tariffs, maybe more than in your average American household, but I do think we're all going to start feeling the pinch of tariffs. What I was really interested in was how these tariffs are being framed. And it's really easy to dismiss how the administration is dismissing the idea that they're attacks, dismissing the idea that American consumers are going to pay for these tariffs, right? That's just a fundamental misunderstanding and is an outright lie. But there is, I think, some more insidious misinformation coming out about this. Julian Sanchez, who's actually a libertarian writer, uh had a Substack uh about this. And he pulls out kind of two or three or four examples of the ways in which people are lying about tariffs. Now, I pulled this story out a couple of months ago when you know things first started going in that direction. So obviously news is changing, everything is changing pretty fast. But that being said, one of the things that he called out is that the administration refers to these as reciprocal tariffs, and the press is largely picking up on that framing. But he says calling them reciprocal leads people to think of them almost as an act of self-defense. We're only doing to them what they have already done to us. I note, incidentally, that this is a piece of the broader MAGA strategy of inventing an offense that hated groups have committed in order to justify taking action against them. Didn't even occur to me that there was a connection between what you're talking about, Rachel, and what I'm talking about here. But I think that that it's really interesting that this shorthand of reciprocal tariffs has made it into kind of the mainstream conversation that we're having about it, even though it is really a mischaracterization of what is happening.

Rachel

Politicians spend a lot of time thinking about what the shorthand for these things is. I was listening to Make Me Smart the other day, and they were talking about how it took them a silly long time to realize the big beautiful bill is actually called the Big Beautiful Bill. There's no alternate name. That is actually what it's called. And then this conversation of how like these terms get reused, like they get printed. They have a power of their own beyond what's actually in any of these acts or executive orders or bills or whatever.

Dan

Do you remember when the tariffs came out and Trump held up that chart? What did everyone focus on?

Rachel

I can't remember that far back.

Dan

It's crazy because everyone was talking about the tariffs on the penguin aisle.

Rachel

Oh, yes, this.

unknown

Yes.

Dan

I was so mad when I saw on CNN Jake Tapper ask I can't remember who it was, Secretary of Agriculture about the tariffs on the penguins because he was taking the bait. He was falling for this disinformation tactic, right? There were so many more uh important things for them to dig into and to waste air time on the penguins was uh really infuriating.

Rachel

Yeah. So I think the theme we're both kind of landing on here is like disinformation is often a matter of context setting and framing, even if there's no outright lie you can point to.

Dan

Are you ready to talk to Adam?

Rachel

Let's go talk to Adam.

Dan

Our guest today is Dr. Adam Ratner, someone I've known for many, many years. Dr. Ratner is a pediatric infectious diseases physician in New York City and the author of the new book, Booster Shots: The Urgent Lessons of Measles and the Uncertain Future of Children's Health. Adam, thanks for joining us.

SPEAKER_01

Great to be here.

Dan

As you know, we're focused on misinformation, and it feels like infectious diseases is one of these areas that has been infected, shall we say, especially by misinformation. Can you maybe take us back to the very first time you encountered misinformation in your practice?

SPEAKER_01

It was probably, unfortunately, a lot of the same things that we're still dealing with now. I my guess is that my first real encounter with it would have been around vaccine hesitancy, probably either during my pediatrics rotation during medical school or as a resident in general pediatrics before I did my infectious disease training. And, you know, I think there's a big difference between hesitancy and being anti-vaccine. And I think what I try to tell parents and what my mentors told parents is it's totally reasonable to have questions about anything that a doctor recommends for your child. You should understand what we're recommending and why and and what the benefits are and what the risks are, and that's all fine. But you know, the the issue with some of the anti-vaccine talking points and just the the approach is that it's built around not a healthy dialogue where there's an exchange of information and a building of of trust, but it it's built around these fixed false beliefs and these, you know, these conspiracy narratives. And I I think that you see both of that in the parents of kids where there's a question about vaccination. Like some parents uh really do just want reassurance and want to know why we're recommending something, want to know what the potential side effects are. And some parents come into the conversation having been convinced already by anti-vaccine narratives, and those kinds of conversations can go south very quickly. And I I think I I saw both things during my training, but they they were definitely there even that long ago.

Dan

When we hear about vaccine hesitancy, we think about that sort of doctor-patient encounter a lot. But I think the misinformation has other ramifications in, let's call it, the information ecosystem that you live in. So I wonder if you could tell us about sort of besides that doctor-patient encounter, like what are some of the other implications or spillover or kind of the other areas of this information ecosystem that is affected by the misinformation around vaccines?

SPEAKER_01

Yeah, there's the very kind of individual or parent-child dyad piece, there's the physician piece, and then there's the much larger public health piece. And the thing that we've seen that's been true for a long time, but but really I think came into view during COVID is that these anti-vaccine narratives can spill over and can have much wider effects. And so if you look at what happened during COVID, the story of the COVID vaccines is a story of an incredible technical triumph where, you know, we had a brand new disease that was killing many, many people. We developed a vaccine quickly. It underwent rigorous testing and it saved millions of lives. That's a triumph. That's wonderful. But what came out of it was a tremendous amount of misinformation, even before the vaccines were really available. There, the misinformation had started. At the very beginning of COVID, there are newspaper articles of anti-vaccine rallies talking about how this is their moment where everyone's paying attention to infections and public health. That misinformation translated into differences in death rates in Republican-leaning versus Democratic-leaning states or counties or they so it it had real population level ramifications beyond just, you know, is this particular family going to choose to vaccinate their particular child? If you look at death rates in red states versus blue states, the death rates were higher during COVID in the red states because vaccine misinformation became wrapped up in people's identities, which is crazy. Where you know it's not just that the parents in these particular communities in in West Texas are hesitant about vaccines. It has become part of people's identities. I was watching one of the news reports early on in that outbreak, and someone was talking to a parent in Gaines County asking about other vaccines. Well, what about the flu shot? What about the COVID vaccine? And the parent turned to the person interviewing and said, Oh no, we don't do the COVID vaccine. This is West Texas. We don't do that here. And so it it wasn't just, I have questions, I think the vaccine came out too fast, I'm worried we have too many vaccines, like all the things where a person can have a reasonable conversation about it, but it it's become baked into people's identities. You know, and we're seeing the downstream effects of that already.

Rachel

I wonder if we're seeing I don't know if it's upstream effects, but we're seeing the things that are being communicated to us by, say, RFK are representations of like the Maha identity and that wrapping up of beliefs into identity and then influencing policy.

SPEAKER_01

Absolutely. I I think that is as much a part of his message as any particular policy thing he may be talking about. It's this idea that is just repeated over and over ad nauseum that it's all a conspiracy. The NIH has been lying to you, the CDC has been lying to you, we're the only ones who know the truth, we're gonna get to the bottom of this. And people believe it, and it undermines decades of public health progress and things that really have demonstrably improved the health of kids and parents in this country. You know, in Milwaukee, they had a a major lead poisoning issue recently. A number of buildings were highly lead contaminated. The uh Milwaukee Department of Health asked for help from CDC, and because of budget cuts and staffing cuts, CDC essentially said we can't. They they were unable to provide help for lead poisoning. Can we all at least be anti-lead poisoning? Please.

Rachel

That's asking a lot, Adam.

SPEAKER_01

I know, I'm sorry. That's a direct result of this Maha attitude of we have to tear everything down. Everything that was public health is bad, you know, because it's it's tainted by the people who came before him. And the danger from that is real.

Rachel

You said the word progress, and then you you also came back and we talked about like unmaking decisions, right? Like, wait, are we all still agreeing lead poisoning is bad or have we unmade that decision? And I think that's just kind of my comment in the form of a question.

SPEAKER_01

I think there used to be consensus that it was important to protect kids against certain things. Like vaccination policy did not used to be an enormously contentious political issue. There were differences of opinion. There were people who thought that you know school mandates should be widespread and there should be no exemptions to them, and there were people who thought we could get to the same place with having a little bit looser policies. There were people who thought it was horrible to have the federal government involved in vaccine funding. There were people who thought that it was essential to getting vaccines to people who need them. These are are discussions that you can have. That's fine. But there there was not a large group of the country that was saying that, you know, it's all a plot. Vaccines are killing our children. And that's where we are now.

Rachel

Do you think misinformation has changed the criteria for decision making?

SPEAKER_01

Yeah. I I mean I think there used to be scientific consensus, and and there still to a large extent is, but there is not general population consensus that the scientific consensus is what we should be relying on for making decisions. And so there's this trope that keeps coming up recently about how not all vaccines have been tested with placebo-controlled studies. And much of what is said in that is false because nearly all vaccines have been tested in placebo-controlled studies. Certainly all new vaccines are. And so if you look, for example, at the COVID vaccine, which all of these people hate, the, you know, all of the early studies were COVID vaccine versus placebo. The studies are there for them to read. That's how we knew that the COVID vaccine worked. Once you knew that it worked, you could no longer do ethically a placebo-controlled study. In the same way, we have some vaccines that were tested in only small placebo-controlled studies early on, and we know work now, and so you can't go back and ethically randomize people to placebo-controlled studies. And if you have something like the measles vaccine, which you know protects kids against a potentially deadly disease, if someone comes up with, you know, let's say someone develops a new measles vaccine and they want to test that, the way you test that is you test it against the standard of care, the existing vaccine, because then both groups get provided protection. You look for something called non-inferiority, you show that it protects you within a certain range of uncertainty at least as well as the existing vaccine, and you go from there. It's not like these are things that haven't been thought about before, but it all sounds very reasonable when someone says everything should be tested in a randomized placebo-controlled trial, but you don't do a placebo-controlled trial of parachutes or seat belts or other things because you can't always ethically randomize someone to a placebo group. We have these new respiratory syntial virus vaccines and monoclonal against RSV that were using the vaccine in pregnant people and then the monoclonal antibody in young infants. Those were tested in placebo controlled trials because before those were available, we didn't have a good method for preventing RSV. For the second generation of those things, you're not going to be able to do the placebo control trial. And that's okay.

Dan

One of the things we talk about in booster shots is the decaying trust in science. Not just vaccine hesitancy, not just anti-vax, but sort of questioning the methodology, even sort of speaks to that decaying trust in science. I know you did some research in putting together booster shots. My my question is as you sort of thought about the research, I guess there's a chicken and egg question. Which came first? Was it the decaying trust in science, the loss of trust, or is it the misinformation?

SPEAKER_01

I think those things coexist. And I think that one is sort of a tool of the other. I I think that you have people trying to sow mistrust in science to further their view that we are headed down the wrong path. It is, as a mentor of mine has has said repeatedly over the years, it is so much easier to scare people than to unscare them. And so the the idea that you can just raise doubt, just asking questions, and that can really frighten people because for vaccines in particular, the people on the receiving end of this information are in a uniquely vulnerable. Position. If you are a parent and you you have a young baby, all that you want to do is the right thing for this kid. And that is true of I was going to say 99%, but it's actually probably 100% of the parents who I deal with. And even the parents who come in and they're like, absolutely not, we're not vaccinating our child, those are parents who are trying to do the right thing for their kid. They're misinformed and they are unwittingly putting their child at greater danger through that decision. I I think that the fundamental impulse, though, is not just reasonable, but completely understandable, which is that they're they're trying to do their best to protect their kids. And I think that's true of sharing some of the misinformation. Also, I think if you're not talking about the people at the top of the anti-vaccine movement where it's where they're making millions of dollars from this and the whole thing is a grift, because I think really, really the whole thing is a grift. But if you go one level down from that and you have the maha moms or whoever who are sharing information on Facebook and they're telling people don't get the vaccine, the vaccine is dangerous, and they're not selling anything. These are people who I think at heart have good intentions. They have fallen victim to these people who don't have good intentions.

Dan

You talked about sort of Facebook and the spread of these misinformation memes. What are some of the unexpected ways in which the anti-vax movement is reaching its target audience?

SPEAKER_01

Yeah, they have been unbelievably creative. That message really came through to me in the the big measles outbreak that we had in New York City in 2018 and 2019. And that outbreak, there were actually two linked outbreaks. One was in Brooklyn within Orthodox Jewish communities and Williamsburg and Borough Park. And the linked one was in Rockland County, which is north of New York City, which also has a large uh Orthodox Jewish population. There's a fair amount of people going back and forth between the two places. And one of the things in general about these populations is that they don't have a big internet presence. So some of the sects of Orthodox uh Judaism don't use the internet or electronics at all. Other people will will will use it, but you know, they're not generally walking around with smartphones, they're not generally posting on Facebook. And so the sort of normal recipe of Facebook groups and and that kind of way of spreading misinformation doesn't work. What worked incredibly in this community was spreading of misinformation in more analog sorts of ways. And so what you saw was this alliance between traditional anti-vaccine folks and some people from the community. There was a group called Peach, which was an anti-vaccine group specific to the community. They put together a brochure that they called the Vaccine Safety Handbook. It's incredible. I will send you a PDF of it. It is very professionally put together. It has uh a picture of a girl from an Orthodox family, a little cartoon on the cover. She's sitting alone in a doctor's exam room, like up on an exam table that's way too high for her. Like her feet are are dangling. Like you're like, how did that child even get up there? There's no grown-up in sight. So she looks frightened. And the whole booklet, it's probably 30 pages long, is a combination of English and Yiddish descriptions of all the familiar anti-vaccine tropes, the the autism things, the the everybody is lying to you things, the toxins in the vaccine, all of these things are in there. It's all very familiar. It's just laid out in a way that is directly targeted for this community. That brochure was slipped under people's doors. It was handed out at supermarkets. Like by I've I've heard stories from people in the community that they would come home and and in their supermarket bag there would be a copy of this. Wow. Yeah. And they also had a hotline called um a caries hibias, which means woman of the house. There there were these like young mothers' groups where they would have basically conference calls where they would talk about parenting things. And and this is fully reasonable, but they would bring in anti-vaccine folks onto these calls and they would have a captive audience. And it was presented in the same way that tips for dealing with diaper rash was was being presented. And so it got mixed in with very benign seeming parenting tips. That took me aback. And the same thing happened in the Somali American community in um in the Twin Cities a few years before that. The anti-vaxxers went there, met with Somali community leaders really trying to talk to them. And that's all on top of the traditional things that they do there, you know, for the flooding of social media, the you know, RFK Juniors children's health defense thing, which now produces these semi-professional looking news broadcasts about vaccines. And then there's this even more insidious stuff where if you look at at certain Amazon categories and like best sellers within them, like all of the best sellers within the vaccines category are anti-vaccine books. And so there's something about how Amazon is categorizing things, where the you know, the number one vaccine book will be an RFK anti-vax or one of these things. It's bananas. And last thing, keep going. They they have co-opted now in in the Trump era, they've co-opted some of the really mainstream sources where you know we now have to worry about what's on the CDC homepage. Trump and Badacharya and Makari and all of these guys now have a uh their own journal. It's the Journal of the Academy of Public Health, which sounds very oh yeah, it's nonsense. That's where they're publishing a lot of their garbage. And so they're trying very hard to, you know, A, get their message out, which I understand, but also now that they have this power, they're trying to poison the waters of the scientific literature and say, oh, we have our peer-reviewed journal also. What makes yours better than ours? Yeah, they co-opted uh covet.gov, right? Oh, yeah. Yeah, that that is now like Lab League Central. Lab League Central.

Dan

It's disgusting. Rachel and I ran a conference uh a couple weeks ago. We were very fortunate in that the keynote speaker for this conference is someone who studies misinformation. Her name is Dr. Claire Wardle. She talked a lot about anti-vax stuff and she put up on the screen an example from the uh Australian government of good information about vaccines. And I wanted to message you guys at that point because it could not hold a candle to that brochure in the Orthodox Jewish community. It was dense, there were no illustrations, it was long, right? It was, it was just this hefty, imposing, scary document that was full of good information about vaccines. And I flashed back to seeing that PDF of uh the one from the Orthodox Jewish community and just remembering how it read. It was it was verging on like a um, just to date myself, like a highlights magazine. It was fun and it was short articles and it was illustrated and it was colorful and it was interspersed with lots of other kind of lifestyle type uh information. To me, it was this very stark night and day comparison of this sort of high friction but useful and practical and real information, truthful information, and the low friction but sort of packaged really nicely, uh inaccurate uh information.

SPEAKER_01

Yeah, I think we have some of the good, well-packaged information, not necessarily from the government, but I think there are some science communicators out there now who are doing a great, great job with this. It's just it can be hard for parents who either don't want to find that or it can just get lost in the in the flood of other stuff. Like if you search vaccines on Amazon, you find garbage. And if you search vaccines on Instagram or TikTok, you get garbage.

Dan

So just to come back to the beginning of all this, that fraudulent paper on the NMR vaccine came out in 1998. Would you say that the main changes to vaccine hesitancy have been these kinds of new ways of spreading this disinformation? Have there been other kinds of changes that you have felt like in your practice or in your role in public health that have changed over the last 30 years?

SPEAKER_01

Absolutely. I mean, there was vaccine hesitancy before the Wakefield paper, of course. For as long as there have been vaccines, there have been some people who have raised questions about them in the 70s and the 80s. There were concerns raised about the diphtheria tetanus pertussis vaccine. There was a a pretty poorly done study in the UK that raised concerns. A lot of parents stopped getting the uh DTP vaccine at that point. They had huge outbreaks of pertussis. And then in in the 80s in the US, there was a documentary about the purported concerns about the DTP vaccine, and that that led to kind of the birth of the American wing of the anti-vaccine movement. But it it never really found as much traction as it did after the Wakefield paper. And I I think that was because you know Wakefield himself was incredibly charismatic, still is, and he he found this message that you can sum up in three words, right? Like vaccines cause autism. And that has been this unbelievably sticky message that you know that that we're still dealing with now. And I think part of its appeal is just that it's short and it's easy to remember. And part of its appeal is that it's addressing an issue that is complicated. And so if you ask Wakefield what causes autism, he says vaccines cause autism. And if you ask a good pediatrician what causes autism, they say, well, lots of things. It's a complicated question. You know, there are genetic causes of autism, there are environmental causes of autism, there are some infections that can cause autism, and you've lost your audience by then. Right. And so I I think people are, especially parents who are wondering, you know, w what has happened with with their child or or with a child of a family member or something, it's easy to see how people get sucked into that kind of messaging.

Rachel

I've also kind of heard this theory floated that makes me think of w what feels more urgent. You know, if it's been so long since we've had children dying of measles, that that feels less scary than your child getting autism, which is a thing that we talk about a lot now. Does that feel true to you?

SPEAKER_01

Absolutely. And I I think that the familiarity of the diseases is really what differentiates the current generation of parents from the generation before. Like the current generation of parents, including the anti-vaccine parents, these are folks who are vaccinated. Like their parents decided to vaccinate them. And that's in large part because their parents or their grandparents knew people with polio, maybe new people who had a child who died from measles. If you go back far enough, you you find people who have really seen these diseases. It was interesting in the 2018-2019 measles outbreak here. Like I had seen a couple of cases of measles before, not a ton. Most of the people who I was working with at that time taking care of kids here had never seen kids with measles. Some of the older pediatricians had. But we have this whole generation not only of parents, but of doctors who have never seen kids with these diseases. And that's a good thing, of course. But I imagine they get asked frequently, yeah, when was the last time you saw someone with polio or or diphtheria or something? It's not necessarily the most relevant question because the the answer for almost all of them is never, but but why do you think that is? It can make it hard for the discussion to really resonate with the parent, I think. And maybe it makes it hard for the doctor to really have their heart in it the same way that they would if they were like, no, I've taken care of a ton of people with polio.

Dan

My uh throat condition is caused by the human papillomavirus HPV. And when I was a kid, the HPV vaccine didn't exist. This throat condition has largely been eliminated in Australia because Australia mandates HPV vaccinations. And so when the HPV vaccinations came around for our kids, we got them both vaccinated. We knew exactly what it was. We were like, yep, no problem. And the pediatrician I recall now, he was telling us that they refer to it as, uh, and I don't know if they still do this, but certainly when we were talking to him about it, he said they refer to it as the cancer vaccine because HPV causes so many forms of cancer. And it it really strikes me now in this conversation how the medical community is making some attempts to make these sort of pithy, quick, easy to understand shortcuts to help make people feel more confident about the medical treatments that they're getting without being wholly inaccurate. Um, right. At the same time, they need to have a a modicum of accuracy.

SPEAKER_01

Right. I mean, that that's the major reason we vaccinate against HPV. So I don't think it's disingenuous to say that in the same way that you, you know, you would call the meningacockle vaccine the meningitis vaccine, right? And the HPV vaccine is unbelievably important and is something where there's a lot of parental ambivalence because you know, I I think that on a lot of message boards and and stuff and in a lot of parent conversations, they talk about it as an STD vaccine. Also true. Sure, but but that's not the point of the vaccine. The vaccine is there to protect people against cervical cancer and penile cancers and head and neck cancers. In the same way, you know, the we give the hepatitis B vaccine early in life as a way of preventing cirrhosis and liver failure and liver cancer. And the reason you give this vaccine so early in life isn't necessarily that children are going out and acquiring hepatitis B, it's that they can get it vertically from their their mother at around the time of birth, and many people are infected and don't know about it. And if you get hepatitis B early in life like that, your odds of going on to developing liver cancer from it are very high. And so with it's it's purposefully given at that time for maximum benefit, and it prevents cancer. But you know, you you get people who are saying, well, it's a disease you get through sex or through, you know, sharing needles, and my one week old is not going to have sex or share needles. Right. That's not the point, and it's not the only way that you get it, but that's sort of the easy pushback from them.

Rachel

So we've kind of talked about this pithiness as being a leg up when you're talking to parents or people who are deciding whether or not to get vaccines. It probably has an effect on policy-making individuals as well. And I'm curious if you're seeing this divide of the factual research information, is maybe like people's eyes kind of glass over, and then like the pithy misinformation is a lot easier to digest. Do you feel like that's having an effect on policymaking and the people who are making decisions at that level?

SPEAKER_01

Yeah, absolutely. And I watched the RFK Jr. initial hearings around the time of his appointment, and and just today, you know, we're taping this on May 14th. You know, there were uh appropriations hearings. I I watched a piece of those as well. And you know, it it's really remarkable because he will say things that are demonstrably factually incorrect. And someone on the committee will say, well, that's not what experts say, or that's not what the science says, and he will just keep hammering at the same tropes. There's no provision of evidence, and there there's no sense that you have to back up anything that you say. It's a you know, it's a very lawyerly as opposed to scientific way of that that he approaches these discussions. He sort of talks over people and and yells, and it is disheartening. And it it's one of the ways I think that you know he just tries to get his message out there regardless of of what the truth is.

Dan

Adam, how do you stay on top of sort of the state of misinformation these days? I mean, for better or for worse, it's kind of an important part of your practice, I would imagine, as an infectious disease specialist. But I think just generally in the medical community, can you help us understand sort of what steps the medical community takes to try and understand the state of misinformation?

SPEAKER_01

Yeah, it it never ceases to amaze me. I mean, I I try to pay attention to what's out there, and I I talk to you know parents of kids who I see in my clinical practice, but but it's ever-changing. I know that there are doctors and science communicators who are sort of out there on the anti-vax boards, like watching I am not one of those, A, because I don't have the stomach for it, and B, I don't have the time for it. There are a handful of science podcasts and uh you know other science communicator outlets. I really like your local epidemiologist, I really like Nerdy Girls.

Dan

But there's no there's no like formal mechanism in this in the medical community for doing that.

SPEAKER_01

Not really. I mean, we we talk about this a lot, and you know, I'm involved in an American Academy of Pediatrics um uh committee on infectious diseases. We talk about it a lot there because we you know vaccine hesitancy is is one of the big things that we do, but it not in sort of the minute-to-minute what are people saying now. I think it takes a while for that kind of uh thing to bubble up to us.

Dan

Adam, thank you so much for joining us. This was just an amazing conversation.

SPEAKER_01

It was great to be here. Thanks so much.

Rachel

So, Dan, after we talked to Adam, what are you left thinking about?

Dan

Something did very much stick out to me, and that was the story he told about how books are classified in, shall we say, certain large online booksellers, and that books related to anti-vaccine, vaccine hesitancy, or perpetuating this mistrust of science were categorized the same as books about epidemiology, books about vaccines, books about infectious diseases. Uh, and it was interesting to me that people can abuse the tagging of these books in this way by sort of tagging something vaccine related, even though anti-vax is probably not the intent of that tag.

Rachel

So it was interesting to hear Adam talk about it in happening with the subject vaccine on Amazon. And it made me immediately think of how I've seen that happen internally at places where I weren't, where we kind of have this competitive use of taxonomy terms to distort search results. You tag for more things than you really need to because you really, really, really wanted to show up and search if someone like searches for that thing. Right. So you see it a lot for like SCM, or you see it like internally for site search results for teams that really want their stuff to get seen.

Dan

Yeah. I mean, again, depends on your perspective, but the person in me who's taking a very political view says that seems kind of insidious. But the information architect in me says, that's not quite right, right? I think we can do better in terms of crafting this information ecosystem to make sure people understand what they're clicking on, what they're looking at when they look at these things based on the way they're tagged or categorized. It reminded me a lot of 1984, and Orwell uses this term doublespeak, right? To kind of refer to this notion that words take on, in a sense, the opposite meaning or the or an alternate. Meaning. And so I'm proposing the lens double tagging. I hope that doesn't mean anything weird.

Rachel

We did a quick Google before this and we feel okay about it.

Dan

Basically, the idea of double tagging is asking yourself how can existing classification systems be exploited to miscategorize or mischaracterize what's being labeled or categorized. In this case, labeling something about vaccines when it may be more about trying to further the anti-vax movement, when it may be trying to sow more mistrust in science, suggests to me that that use of that tag is disingenuous, is an example of double tagging.

Rachel

When we talk about taxonomy design, we do talk about how you have to be careful, like what words you're choosing to include in the taxonomy, because it's going to give away your worldview, right? It's gonna every taxonomy is gonna have some kind of lean or bias. But I think what we talk about less than is like, let's say you're even super careful about that. Now this lens is asking us to almost red team it, like which is a security uh uh measure where you look at a thing and you ask, how could this be exploited? Right. How could this be used to do harm? And so we're kind of looking at those taxonomies and saying, how could these be used to do harm?

Dan

Yes. It also makes me think about uh trying to anticipate the future, right? And this is a thing that we we do in information architecture, is like we're always trying to think about how do we make sure make sure this structure is as resilient, future-proof as possible. And obviously, none of us have crystal walls, so we we don't know what's gonna happen, but we can make sure that the space is flexible enough to accommodate new things. And it does make me wonder if I'm designing a taxonomy and there's a term in there that today is harmless, but tomorrow can be exploited. How can we design a taxonomy, a structure that allows me to incorporate new terminology to uh reveal these distinctions, which may be unnecessary today, but important tomorrow?

Rachel

Very cool.

Dan

What about you?

Rachel

What I noticed after talking to Adam was the volume of information sources and all of the different places the information is coming from in his experience, like for parents and caregivers, and even for him. We asked him, like, how do you stay up to date on some of this stuff? And he started listing podcasts and like a couple sources, and then as we were talking, just lots of websites came up and lots of different brochures and pamphlets that he has seen floating around to parents. And I just got this feeling of frenzy, and so that's the lens I'm bringing today is frenzy. This lens really asks us to look at how a system encourages or discourages frenzy. And the reason I focus on frenzy is because I think frenzy is rewarded in the modern information ecosystem. Misinformation tends to thrive in frenzied environments. You know, we talked about that in our pilot with uh breaking news often has this blossom of misinformation because there are facts missing, but also because things feel like they're moving really fast. And so there's this sense of frenzy. And when you're feeling frenzied or feeling like you're being pushed towards urgency, there's a lot of quick decisions being made and quick interpretations. So I think this lens is really about getting us to think about what are the urgent concerns, like what is most important in a particular information exchange, and how is the system placing the right prioritization on the right information in order to hopefully relieve frenzy. I think that's kind of the implication of this lens is maybe we want less frenzy, not more.

Dan

When you say the word frenzy, I immediately go to David Attenborough Nature documentary, Vultures Descending on Carrion, right? Like there's just this or hyenas, like frenzied activity around whatever it is. Yeah. And um, it's like it's like they all get drawn in, and it's this sort of like every creature for themselves type thing. I don't know if that's what you intended by this word, but it does make me wonder like what in the information space is drawing everyone in? What is in your mind, based on the things that you heard, what is creating that frenzy?

Rachel

At least in the context of talking to Adam, it's fear. I had a couple lenses I was juggling here and a couple ideas, and I was thinking about fear, I was thinking about doubt. I think those are broader topics that we'll probably get into at some point. But yeah, this fear of making the wrong decision and the right decision came up with Adam. You know, as a mother in America today, I can speak to like the pressure that is just on you every day for making the best possible choice among millions of choices about everything, and this need to like quickly do the best job ever and don't make any mistakes. And I think that that lends itself to this frenzy where you're either in a defensive mode trying to stave off bad things from happening, or you're in almost this kind of receptive mode where you're getting so much information and just trying to make the right choice. And both of those situations create that kind of, I'm imagining like, you know, when bees swarm on something too. It doesn't have to be like this attack of like, oh man, like someone's trying to kill me, but there's this just like locus of activity and information being exchanged very, very quickly.

Dan

What I'm hearing you say is that the the frenzy is created by external pressures, pressures not necessarily embedded in the information ecosystem, or at least the digital parts of the ecosystem, or at least kind of the parts that we might design, but there may be a frenzied need to get answers to information because of either fear or doubt, or or just sort of a lot of attention being paid to something. Did I hear you right?

Rachel

Yeah. When I imagine how I would use this lens, I'm thinking about this is really idealizing here. Let's say I'm designing some social media platform, which I hope I never am, honestly, but let's say I am. And we know there's frenzy happening out in the world about a particular topic, and that frenzy bleeds into the exchanges we see on this platform. What I want to use this lens for is almost as a way to check for like how am I giving my users a second to breathe? I like that. And not perpetuating the frenzy or like exacerbating the frenzy in this space.

Dan

I like that. And I also feel like to some extent, a lot of disinformation and misinformation techniques put the onus back on the consumer of the information. Feels like you could go in that direction with frenzy. Like, how do we tell them to chill out? But I like where you're going, which is like, how do we not perpetuate the fear by creating, let's call it an information uh frenzy?

Rachel

Information frenzy, yeah. And so you have these individual recommendations. Um, you see that in misinformation too, right? Which is around like if people need to learn information literacy, we need to teach people that sort of thing. Great. Okay, that has a role. I think this lens especially is also asking us to look at the systems we put in place that might exacerbate those issues. What can we do at a system level to complement the individual recommendations people are receiving for how to mitigate misinformation?

Dan

All right. Double tagging and frenzy to new lenses.

SPEAKER_00

Curious Squid helps organizations like yours untangle complex information architecture and user experience challenges. Visit us at Curious Squid dot com.

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Dan Brown

Host
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Rachel Price

Host
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Dr. Adam Ratner

Guest